Clinical Ethics recent issues

Focusing clinicians on ethics

Slowther, A. — Mon, 16 Nov 2009 17:45:09 PST

Ethics in collaborative global health research networks

Parker, M., Bull, S. — Mon, 16 Nov 2009 17:45:09 PST

Clinical Ethics Committee Case 8: Should we carry out a predictive genetic test in our young patient?

Newson, A. J — Mon, 16 Nov 2009 17:45:09 PST

Truth-telling in health care

Slowther, A. — Mon, 16 Nov 2009 17:45:09 PST

Competent minors and health-care research: autonomy does not rule, okay?

Biggs, H. — Mon, 16 Nov 2009 17:45:09 PST

A dearth of clinical research involving children has resulted in off-licence and sometimes inappropriate medications being prescribed to the paediatric population. In this environment, recent years have seen the introduction of a raft of regulation aimed at increasing the involvement of children in clinical trials research and generating evidence-based medicinal preparations for their use. However, this regulation pays scant attention to the autonomy of competent minors. In particular, it makes no provision for the ability of competent minors to consent to participate in medical research and is therefore at odds with best ethical practice. This article explores the tensions between law and ethics in relation to clinical research involving minors and concludes that greater respect should be given to the autonomy of those minors who are competent to decide for themselves.

Cutting through red tape: non-therapeutic circumcision and unethical guidelines

Shaw, D. — Mon, 16 Nov 2009 17:45:09 PST

Current General Medical Council (GMC) guidelines state that any doctor who does not wish to carry out a non-therapeutic circumcision (NTC) on a boy must invoke conscientious objection. This paper argues that this is illogical, as it is clear that an ethical doctor will object to conducting a clinically unnecessary operation on a child who cannot consent simply because of the parents’ religious beliefs. Comparison of the GMC guidelines with the more sensible British Medical Association guidance reveals that both are biased in favour of NTC and subvert standard consent procedures. It is further argued that any doctor who does participate in NTC of a minor may be guilty of negligence and in breach of the Human Rights Act. In fact, the GMC guidance implies that doctors must claim conscientious objection if they do not wish to be negligent. Both sets of guidelines should be changed to ensure an objective consent process and avoid confusion over the ethics of NTC.

Subject positions in research ethics committee letters: a discursive analysis

O'Reilly, M., Armstrong, N., Dixon-Woods, M. — Mon, 16 Nov 2009 17:45:09 PST

Ethical review of applications to conduct research projects continues to be a focus of scrutiny and controversy. We argue that attention to the actual practices of ethical review has the potential to inform debate. We explore how research ethics committees (RECs) establish their position and authority through the texts they use in their correspondence with applicants. Using a discursive analysis applied to 260 letters, we identify four positions of particular interest: RECs positioned as disinterested and responsible; as representing the interests of potential participants; as facilitating ethically sound, high-quality research; and as engaged in dialogue. These positions are used strategically to deflect criticism or complaint. This analysis has implications for reducing contestation between researchers and RECs, suggesting that more dialogic rather than hierarchical approaches to positioning might be helpful.

Experiencing bad treatment: qualitative study of patient complaints concerning their treatment by public health-care practitioners in the County of Stockholm

Wessel, M, Helgesson, G, Lynoe, N — Mon, 16 Nov 2009 17:45:09 PST

The aim of this study was to investigate patients' experiences of not being treated well in medical health care in Stockholm County, Sweden. The study was conducted by implementing qualitative content analysis using categorization of empirical material for 2006 and 2007 provided by the Patients' Advisory Committee (Patientnämnden) in Stockholm. Complaints about not being treated well accounted for 13% of all complaints to the Patients' Advisory Committee. A sample of those who complained about their medical treatment shows that about 30% of these complaints also involved experiences of being badly received. Categorization of the complaints about being badly treated resulted in the following 11 categories: (1) rude, aggressive or arrogant behaviour; (2) being ignored; (3) being denied examinations or treatments; (4) lack of empathy among personnel; (5) lack of respect for personal integrity; (6) lack of time/waiting time; (7) personnel not separating private issues from their professional role; (8) injustice and discrimination; (9) sexual harassment; (10) coercion and violence and (11) unspecified bad treatment. In relation to the total number of patients, women were over-represented in all categories. In conclusion, what patients react most strongly against is when health-care personnel treat them disrespectfully by not abiding by established social norms. The results indicate that the combination of failure in medical treatment and not receiving an apology often leads patients to complain to the Patients' Advisory Committee.

Confidentiality and consent in living kidney transplantation: is it essential for a donor to know that their recipient has HIV disease?

Elias, R. — Mon, 16 Nov 2009 17:45:09 PST

It is now possible for someone with HIV disease to receive a kidney transplant from a living donor, although there is evidence only about the short-term outcomes of such a procedure. A person with HIV disease may not wish to disclose their diagnosis to a potential kidney donor. This paper argues that disclosure of the diagnosis of HIV to the donor is not necessary for informed consent. Concerns about the relationship of trust between the clinical team and the donor hold weight in deciding whether disclosure is essential, though openness about the limited nature of informed consent may facilitate a trusting relationship in the absence of disclosure. In general, the recipient's medical information should be treated as confidential, thereby avoiding any need to distinguish between HIV and other medical conditions.

Substituted misjudgement

Woo, J. A, Prager, K. M — Mon, 16 Nov 2009 17:45:09 PST

Substituted judgement is often used in the absence of advanced directives to guide decision-making when patients lack decisional capacity. We present a remarkable case of family members exercising substituted misjudgement for a 42-year-old man hospitalized with multiorgan failure on life support. Feeling that their loved one would rather die than face severe disability, they elected to withdraw life support. Although this was done, the patient remained alive and recovered enough to clearly indicate his preference for life, even with severe disability. This case suggests that in instances of unusual quality-of-life judgements where the patient's wishes cannot be known with reasonable certainty, families and physicians should be very wary using substituted judgement to refuse life support. Unless there are strong considerations based on the patient's prior statements, actions and values to decline life support, it would seem ethically appropriate to continue treatment, even with substantial disability the likely outcome.

Splitting hairs over the definition of murder: Thomas Aquinas and the doctrine of double effect

Papanikitas, A. — Mon, 16 Nov 2009 17:45:09 PST

A recent article in the March 2009 edition of Clinical Ethics stated that, ‘In the Summa Theologica, Thomas Aquinas discusses how murder may be justified in self defence’, provided that killing is not intended. This statement is open to challenge on historical and semantic grounds, with respect to the writings of the 13th Century Roman Catholic philosopher Thomas Aquinas (1225–1274). A better appreciation of Aquinas' writings on this topic could inform the debate relating to medical end-of-life decisions. The normatively loaded word ‘murder’ is not applicable to Aquinas' conclusion on unintended homicide, nor is it applicable to unintended homicide in current law, which is by definition not murder.

Why I Wrote ... Holding On? Vacant Possession, Paternity, Double Trouble, Right to Die - novels addressing key medical ethical dilemmas

McHaffie, H. — Mon, 16 Nov 2009 17:45:09 PST

The role of patients in European clinical ethics consultation

Newson, A. J, Neitzke, G., Reiter-Theil, S. — Tue, 01 Sep 2009 09:38:11 PDT

Clinical ethics committee case 7: our young patient is in heart failure but has multiple co-morbidities. How can we best care for him and his family?

Newson, A. J — Tue, 01 Sep 2009 09:38:11 PDT

Planning for and managing pandemic influenza

Slowther, A. — Tue, 01 Sep 2009 09:38:11 PDT

A plea for precaution with public health: the xenotransplantation example

Fovargue, S., Ost, S. — Tue, 01 Sep 2009 09:38:11 PDT

In this paper we argue that while individual private interests such as autonomy and the need for a medical procedure or treatment are important in the provision and delivery of health care and the utilization of biotechnologies, these concepts need to be balanced with other interests such that in certain situations they do not take priority. We use as an example a particular developing biotechnology, xenotransplantation, to suggest that interest in the health of the public is such that this biotechnology should not be permitted to move to the clinical trial stage because of the particular risk of harm it poses to the potential xeno-recipient, their close contacts and the wider population. This is despite the interest of those in need of a transplant in allowing such clinical trials to proceed. We derive support for our position from John Stuart Mill's harm principle.

Involving patients and relatives in a Norwegian clinical ethics committee: what have we learned?

Forde, R., Hansen, T. W. R. — Tue, 01 Sep 2009 09:38:11 PDT

To date, few Norwegian clinical ethics committees (CECs) have included patients or next of kin in case discussions. In 2008, Rikshospitalet's (The National Hospital's) CEC began to routinely invite patients and relatives into case discussions. In this paper, we describe seven cases discussed by this committee in 2008. Six involved life and death decision-making in collaboration with the next of kin, while one related case did not include relatives. In our opinion, representing the patient's perspective was advantageous to the discussion itself, to the conclusion made and to the next of kin's acceptance of the resolution. We believe that if the patient had been represented in the last case, the outcome might have been different. We conclude that successful patient involvement will rely on well-structured case discussions, an open atmosphere and good preparation and follow-up.

Clinical ethics consultation in Europe: a comparative and ethical review of the role of patients

Fournier, V., Rari, E., Forde, R., Neitzke, G., Pegoraro, R., Newson, A. J — Tue, 01 Sep 2009 09:38:11 PDT

Clinical ethics has developed significantly in Europe over the past 15 years and remains an evolving process. While sharing our experiences in different European settings, we were surprised to discover marked differences in our practice, especially regarding the position and role of patients. In this paper, we describe these differences, such as patient access to and participation or representation in ethics consults. We propose reasons to explain these differences, hypothesizing that they relate to the historic and sociocultural context of implementation of clinical ethics consultation services (Cecs), as well as the initial aims for which each structure was established. Then, we analyse those differences with common ethical arguments arising in patient involvement. We conclude that there is no unique model of best practice for patient involvement in clinical ethics, as far as Cecs reflect on how to deal with the challenging ethical issues raised by patient role and position.

The role of patients in clinical ethics support: a snapshot of practices and attitudes in the United Kingdom

Newson, A. J — Tue, 01 Sep 2009 09:38:11 PDT

Clinical ethics committees (CECs) in the United Kingdom (UK) have developed significantly over the past 15 years. The issue of access to and participation in clinical ethics consultation by patients and family members has, however, gone largely unrecognized. There are various dimensions to this kind of contact, including patient notification, consent and participation. This study reports the first specific investigation of patient contact with UK CECs. A questionnaire study was carried out with representatives from UK CECs. Results suggest that patient participation in clinical ethics consultation is low and unlikely to change significantly in the near future. Attitudes towards patients having a role in clinical ethics consultation are mixed, with a variety of reasons put forward both for and against patient participation. These results are discussed in the light of common themes in the literature and the practical and political context of clinical ethics support in the UK.

Patient involvement in clinical ethics services: from access to participation and membership

Neitzke, G. — Tue, 01 Sep 2009 09:38:11 PDT

Ethics consultation is a novel paradigm in European health-care institutions. In this paper, patient involvement in all clinical ethics activities is scrutinized. It is argued that patients should have access to case consultation services via clearly defined access paths. However, the right of both health-care professionals and patients indicates that patients should not always be notified of a consultation. Ethics education, another well-established function of an ethics committee, should equally be available for patients, lay people and hospital staff. Beyond access and utilization, lay membership on a clinical ethics service is a matter of transparency, equal participation, empowerment and democratization. Lay and patient perspectives will contribute to the quality of ethics services on all levels from case consultations to ethics education and policy development.

Strengths and limitations of considering patients as ethics 'actors' equal to doctors: reflections on the patients' position in a French clinical ethics consultation setting

Rari, E., Fournier, V. — Tue, 01 Sep 2009 09:38:11 PDT

The Clinical ethics centre in Paris offers its services equally to doctors and patients/proxies. Its primary goal is to re-equilibrate doctor–patient roles through giving greater voice to patients individually in medical decisions. Patients are present at virtually all levels, initiating consults, providing their point of view and receiving feedback. The implications of patients' involvement are threefold. At an operational level, decision-making is facilitated by repositioning the debate on ethical grounds and introducing a dynamic of decisional partnership, although contact with patients can make it difficult to deny their demands and set the limits of our role. Ethically, it reinforces patients' autonomy and grants them a place of veritable ethics ‘actors’, with the danger that this may become excessively autonomy oriented. Finally, at a collective level, the programme fulfils its political purpose in promoting patients' rights and the ideal of démocratie sanitaire, but complicates balancing individual demands with collective values.

Donating one's brain for research - a very personal perspective

Clayton-Turner, A. — Tue, 01 Sep 2009 09:38:11 PDT

Why I wrote Children's Consent to Surgery

Alderson, P. — Tue, 01 Sep 2009 09:38:12 PDT

Reflections on the ethics of translational research

Williams, C. — Fri, 22 May 2009 11:28:46 PDT

Mad dogs and (arguably) madder Scotsmen: biomedical ethics in an Asian context

Campbell, A. V — Fri, 22 May 2009 11:28:46 PDT

Clinical Ethics Committee case 6: Our patient wishes to take an unlisted drug even though we're not sure of his diagnosis

Newson, A. J — Fri, 22 May 2009 11:28:46 PDT

Organ donation

Slowther, A. — Fri, 22 May 2009 11:28:46 PDT

Should doctors ever be professionally required to change their attitudes?

Whiting, D. — Fri, 22 May 2009 11:28:46 PDT

The General Medical Council instructs doctors not to allow their personal beliefs to interfere with their practice. But if attitudes can threaten to impact negatively on a doctor's practice then the question arises: should doctors ever be professionally required to change their attitudes? In this paper I suggest that doctors should be required to amend their attitudes if two conditions are met, namely: (1) the doctor has an attitude that if neglected by the doctor will (or is very likely to) compromise his or her fitness to practise; and (2) the only way in which the doctor can prevent that attitude from compromising his or her fitness to practise is by changing the attitude. I also answer three objections that might be raised against the position that I advance.

Alcohol dependence in public policy: towards its (re)inclusion

Williamson, L. — Fri, 22 May 2009 11:28:46 PDT

Public policy on alcohol in the UK relies on health promotion campaigns that encourage individuals who misuse alcohol to make healthier choices about their drinking. Individuals with alcohol-dependence syndrome have an impaired capacity to choose health. As a result, individuals with the worst alcohol misuse problems lie largely outside the reach of choice-based policy. However, such policy has been widely criticized and efforts to reform it are underway. This paper argues that the British Medical Association's recent attempt to improve policy on alcohol in the UK by introducing strategies which have been shown to control drinking within populations still gives insufficient attention to alcohol dependence. This is because it fails accurately and consistently to characterize alcohol dependence and gives insufficient attention to the social challenges it presents.

Seven-year-old children's perceptions of participating in a comprehensive clinical birth cohort study

Gammelgaard, A., Bisgaard, H. — Fri, 22 May 2009 11:28:46 PDT

While several studies have explored parents' perceptions of their children's participation in research, very few studies have described the children's own perceptions of their participation in research. The aim of this study was to describe children's perceptions of their participation in a comprehensive longitudinal clinical study. Semi-structured qualitative interviews were conducted with 17 children aged seven participating in the Copenhagen Prospective Study on Asthma in Childhood. The interviews were audiotaped, transcribed and analysed using the template analysis method. The children rated their experiences with venepunctures on a Wong-Baker faces scale. The regular visits to the hospital and comprehensive clinical tests did not seem to have affected the children negatively. In particular, the children would happily engage themselves in medical tests mimicking play (moving, walking, running or playing with a computer). A majority of the children, however, disapproved of the venepunctures and some even refused to have it done. The results of this study indicate that participation in even comprehensive paediatric research can be a positive experience to the participants, with the most popular tests being those that required active participation from the children.

Being 'one cog in a bigger machine': a qualitative study investigating ethical challenges perceived by junior doctors

McDougall, R J — Fri, 22 May 2009 11:28:46 PDT

There is increasing recognition among bioethicists that health-care practitioners' everyday ethical challenges ought to be the focus of ethical analysis. Interviews were conducted with Australian junior doctors to identify some of the kinds of situations that they found ethically challenging, as a basis for this type of grounded philosophical analysis and for further empirical research into junior doctors' ethical issues. Fourteen doctors in their first to fourth year of work from six hospitals in Melbourne participated. Issues discussed included involvement in treatment perceived as inappropriate, seniors discouraging disclosure of errors, coping when requested help was not forthcoming, observing behaviour perceived as unethical, truth-telling and informed consent. The difficulties described often focused on interactions with colleagues and position in the health-care team. Although the results cannot be generalized to junior doctors as a population, these junior doctors' stories point to various issues warranting further investigation, both philosophical and empirical.

Use or ornament? Clinical ethics committees in infertility units: a qualitative study

Frith, L. — Fri, 22 May 2009 11:28:46 PDT

This paper examines the role of clinical ethics committees (CECs) in infertility clinics in the UK, focusing on whether they usefully support infertility clinicians' ethical decision-making. The overall aim of the study reported here was to investigate how infertility clinicians approached and handled ethical problems in their everyday practice and this paper reports on one aspect of these data – what they thought about the use of CECs. This paper gives an overview of what arrangements there are for such committees in infertility clinics; considers why the clinicians used CECs; and examines how these committees provided a useful function in the infertility setting and contributed to making ‘good’ ethical decisions. Finally, the paper examines how the form of ethics support can be developed and strengthened, and concludes with recommendations for a particular model of CECs in infertility units – a designated CEC for each infertility unit.

Ethical decision-making in two patients with locked-in syndrome on the intensive care unit

Kompanje, E J O — Fri, 22 May 2009 11:28:46 PDT

Locked-in syndrome (LIS) is one of the most dramatic neurological outcomes and has a profound impact on patients and their families. Most patients have intact cognition and intellectual ability and perception. Communication is possible with eyelid and/or eyeball movement. According to the literature, the wish to die is not an important issue in acute and chronic LIS. This study describes and analyses the ethical decision-making process in two opposite cases of LIS in the intensive care unit. One patient expressed the wish to prolong her life for as long as possible; the other patient asked for deliberate termination of life. Both wishes were honoured. In conclusion, most patients with LIS are competent and intellectually intact. In The Netherlands the autonomy of the patient is respected by law. In respecting this autonomy, medical choices can be different in comparable patients.

Obtaining consent from minors with parental responsibility

Macharia, E, Milanovic, D — Fri, 22 May 2009 11:28:46 PDT

Britain has the highest rate of pregnancies in Europe among young women aged 15–19 years. In girls under 16, the rates of pregnancy are rising: in 2006, there were 7.8 conceptions per 1000 girls; in 2007, there were 8.3 conceptions per 1000 girls. Where babies are born with conditions requiring treatment, the clinician may be faced with the task of obtaining consent from a parent who is also a minor. These situations present potential pitfalls. Guidance from legislative acts and case law is sparse. For example, the Children Act 1989 does not specify age limits for the assumption of parental responsibility. Legal precedents for assessing competence and capacity may not apply to minors. The Gillick principle for assessing competence does not extend to the competence of minors to take decisions as responsible parents. The Mental Capacity Act 2005 prescribes the limits of capacity but only in those aged over 16 years. Lastly, although a minor's parents will bear responsibility for the minor, this responsibility does not extend to the minor's child. This article explores these controversies through four case scenarios. These scenarios are loosely based on the authors' prior experiences as paediatric surgeons. In light of current statutory guidance, and the paucity of legal precedent, there are few answers to be offered. However, exploring the issues, enabling them to be thoughtfully considered by health professionals, is in itself valuable.

Why I wrote... The Wounded Storyteller: a recollection of life and ethics

Frank, A. W — Fri, 22 May 2009 11:28:46 PDT

Tomorrow's doctors - the place of creativity

Farsides, B., Eckstein, S. — Tue, 17 Feb 2009 09:57:22 PST

A missed opportunity to reform an outdated law

Sheldon, S. — Tue, 17 Feb 2009 09:57:22 PST

Clinical Ethics Committee case 5: Should we discharge our vulnerable patient to a family who seem unable to look after her?

Newson, A. J — Tue, 17 Feb 2009 09:57:22 PST

The Doctrine of Double Effect and end-of-life decisions

Tuckey, L., Slowther, A. — Tue, 17 Feb 2009 09:57:22 PST

A response to 'Death and best interests'

Bridgeman, J. — Tue, 17 Feb 2009 09:57:22 PST

Reasoning about physician-assisted suicide: analysis of comments by physicians and the Swedish general public

Helgesson, G., Lindblad, A., Thulesius, H., Lynoe, N. — Tue, 17 Feb 2009 09:57:22 PST

Two questionnaires directed to Swedish physicians and a sample of the Swedish population investigated attitudes towards physician-assisted suicide (PAS). The aim of the present work was to analyse qualitative data from these questionnaires in order to explore how respondents reason about PAS. Data were analysed in two steps. First, we categorized different kinds of responses and identified pro and con arguments. Second, we identified general conclusions from the responses. The data reflect the differences in attitudes towards PAS among the public and physicians, with the former mainly in favour of PAS and the latter mainly against. There was, however, considerable agreement about what requirements must be met before PAS could be considered ethical. Many arguments against PAS concerned the professional role of physicians, which indicates that it may not be assisted suicide as such that many PAS opponents disagree with, but rather that it is handled by physicians in the regular health-care system.

The Shock of the Human: how the media can change the way we think about ethical dilemmas in medicine

Barclay, S. — Tue, 17 Feb 2009 09:57:22 PST

The relationship between the media and the medical profession is often one of mutual mistrust. However, the media, and especially television, is a powerful tool for telling individual stories and for providing a medium for medico-ethical dilemmas to be portrayed to a wide audience. The extent to which the use of individual narratives can or should influence public opinion about complex medical issues is examined in this paper from the perspective of a former television journalist with a postgraduate degree in medical law and ethics.

Why I wrote ... Euthanasia, Ethics and the Law: From Conflict to Compromise

Huxtable, R. — Tue, 17 Feb 2009 09:57:22 PST

Philosophical clinical ethics

Dawson, A., Wilkinson, S. — Tue, 17 Feb 2009 09:57:22 PST

Hope and terminal illness: false hope versus absolute hope

Garrard, E., Wrigley, A. — Tue, 17 Feb 2009 09:57:22 PST

Sustaining hope in patients is an important element of health care, allowing improvement in patient welfare and quality of life. However in the palliative care context, with patients who are terminally ill, it might seem that in order to maintain hope the palliative care practitioner would sometimes have to deceive the patient about the full nature or prospects of their condition by providing a ‘false hope’. This possibility creates an ethical tension in palliative practice, where the beneficent desire to improve patient welfare through sustaining hope appears to be in conflict with an autonomy-based requirement not to deceive patients about their condition. In order to resolve this ethical tension, we provide an analysis of the concept of hope and argue that there is at least one conception – the ‘absolute’ conception of hope – which when properly understood allows practitioners to foster hope in terminally-ill patients while avoiding any need to deceive them about their condition. Practitioners therefore do not need to shy away from using the language of hope in the palliative setting, as on this understanding of hope it can be used in a way that both promotes patient welfare and respects patient autonomy.

When is deception in research ethical?

Athanassoulis, N., Wilson, J. — Tue, 17 Feb 2009 09:57:22 PST

This article examines when deceptive withholding of information is ethically acceptable in research. The first half analyses the concept of deception. We argue that there are two types of accounts of deception: normative and non-normative, and argue that non-normative accounts are preferable. The second half of the article argues that the relevant ethical question which ethics committees should focus on is not whether the person from whom the information is withheld will be deceived, but rather on the reasonableness of withholding the information from the person who is deceived. We further argue that the reasonableness of withholding information is dependent on the context. The last section examines how the context of research should shape our judgements about the circumstances in which withholding information from research participants is ethically acceptable. We argue that some important features of research make it more difficult to justify withholding information in the context of research than elsewhere.

The rule of rescue in clinical practice

Hughes, J., Walker, T. — Tue, 17 Feb 2009 09:57:22 PST

People often have a strong intuitive sense that we ought to rescue those in serious need, even in cases where we could produce better outcomes by acting in other ways. It has become common in such cases to refer to this as the Rule of Rescue. Within the medical field this rule has predominantly been discussed in relation to decisions about whether to fund particular treatments. While, in this setting, the arguments in favour of the Rule of Rescue have generally been found to be unconvincing, there are some reasons for thinking that it may have more of a role to play at the clinical level. In this article, we examine three lines that such reasoning might take. In each case, we argue that the reasons given do not support the adoption of a Rule of Rescue in clinical practice.